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What do you wear when you are going through topical steroid withdrawal (TSW)? Anything you darn well please! Well, dark fabrics should be avoided. Lighter color shirts help make the tons of shedding flakes “less obvious” (yeah, right, who could miss the little blizzard on your shoulders?) and cotton fabrics, for us, did not hold onto the flakes as much as synthetic material during “shake-the-flakes-off” time. There must be some type of electromagnetic attraction between polyester and dead skin because even the Hoover couldn’t suck it off. Figuring out the right clothes to meet the needs of painful, sensitive skin and “scratched up” knees and elbows took a little more thought.

Even though we stopped using topical steroids on Brian in October 2013, he was still able to go to school in “fifth grade boy fashion”–shorts and long socks in sub-40 degree weather– because the full effects of topical steroid withdrawal had not yet started. The stinging started mid-November, and the worst combination of the visible symptoms–swelling, oozing, crusting, flaking, shedding, red sleeves, and burning redness head to toe–started on the eve of Thanksgiving Day. He was cold all the time because of his messed up temperature regulating mechanism (part of topical steroid withdrawal), and his skin hurt when pants and sleeves or other material rubbed up against it. Thankfully, it was the colder months and long johns were in season, so I bought 5 pairs of long john tops and pants for him. He wore them under his regular long sleeve clothes and used them as pajamas. The body-hugging fit was more comfortable to him and prevented the flaking, sensitive skin from snagging on moving material. Also, they were cotton, so the flakes shook off pretty easily. The two layers served him well for warmth and skin pain management through early April of this year.

As his temperature regulation improved and the days started getting warmer this year, we weaned him off of wearing the long johns shirts and gave him “sun sleeves” to wear with short sleeve shirts. Why use sun sleeves? His arms were still pretty sensitive, scratched up, and itchy, and at least this attire was cooler than 2 long sleeve shirts. The sun sleeves provided a comfortable snugness to his arms. Then, a few weeks ago, he gave up the long johns pants. Having thinner jogging pants material touching his skin did not send him into a frenzy! This was progress! However, despite the increasing temperatures this May, he continued to wear the jogging pants. He did not want to wear shorts because he was just not comfortable yet having his skin and scratchy knees exposed to the air.

Well, today was another milestone in his TSW clothing evolution. It was cool and drizzly outside, and what did Brian choose to wear to school? SHORTS! Oh happy day! 🙂

No, I did not pick out his color scheme, and yes, my Christmas decorations are STILL up!

“Praise the LORD, O my soul, and forget not all his benefits–who forgives all your sins and heals all your diseases.” Psalm 103:2-3

Stopping topical steroids (TS) for my son’s eczema was absolutely, 100% the right decision for us. The terrible withdrawal process over the past 5 months has caused us great tribulation, but it has also given us hope: hope for healing and relief from this ever present itch.

How can I say he is healing when it seems that all I write and talk about is the relentless itching? By looking beyond the itch and looking at his skin quality. While Brian was still on steroid ointments for eczema and early in this withdrawal process, he would get cuts on his feet, knees, hands, elbows, arms, and chest from scratching and rubbing. He would scratch up his face and neck so badly that it looked like he got in a fight with a wolverine and lost. My brave boy never complained, but we felt so bad for him. 150 days after stopping TS, it seems that the itching is worse, based on how much and how hard he is scratching day and night. However, he scratches the same places, and then some, but his face, neck, and knees are not cut up as badly, and his elbows are more resistant to the effects of his hard scratching. See more pictures on 3/3/14 post.

CLICK ON PICTURE TO ENLARGE.

12/5/13

12/1/13 Edematous ear

12/28/13

3/4/14

3/3/14 Neck & face w/ fewer cuts despite scratching

3/4/14 Not too many scratches on neck despite scratching hard

After stopping TS, your body has to repair the months or years of damage done to it. The intense itching is supposed to signify healing. After a particularly active night of scratching, I asked Brian how he slept. He replied with a grin on his face, “Mama, there was a whole lotta healing going on!”

Gotta love ’em. 🙂

“Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” 1 THESSALONIANS 5 : 16 – 18

4) LACK OF FOCUS/CONCENTRATION due to SCRATCHING— RX: Parent assists with itch management/scratching while Brian sits and tries to do school assignments and other seated activities

5) MENTAL/EMOTIONAL—Emotionally labile. RX: lots of hugs; constant reassurance; positive music, language, laughter; ace wrapping hands when he is obsessed with picking off the flaking skin. Participate in activities with friends as much as possible.

6) PHYSICAL—still not 100% but improving.

RX: get outside to participate in baseball, go to the gym, play with friends, run around, as much as he is able during the hours he is awake. Regular activities as tolerated. When Brian was feeling better, 2 attempts at doing school ½ day and full day resulted in several-week flare ups. Try to progress again to ½ day of school when able and hopefully full days before school’s out for the summer.

7) OTHER:

a) SKIN TEXTURE: Pebble-grained texture of dorsum of hands and feet; sandpaper texture of arms and legs. Skin texture of entire back constantly fluctuates between soft and smooth as a baby’s butt to pebble grain texture, with or without redness, sometimes within 30 minutes. Peeling/flaking.

b) SHEDDING— 1-2 Tablespoons dead skin on sheets every day, and more on heavy shedding phase days. RX:Shaking out sheets, bedding, clothes 1-3 x per day and washing daily; moisturize or not with coconut oil, petroleum jelly, or aquaphor

c) EDEMA/OOZING: mild edema in hands and occasionally face. Oozing phases now last only a few days and with minimal breaks in skin. RX: extra sheets to sleep on to absorb ooze and odor; keep skin clean; wrap (arms/hands ) if needed with dry sterile dressing and ace wrap

Our school system has homebound instruction wherein a student gets 1 hour of instruction for each day he misses, as long as it is medically necessary. Brian’s pediatrician submitted a medical referral in December to request homebound. To support his need to stay home, I submitted the information below to his doctor last week. See FAQs for symptom TSW list.

Improvements Since Staying Home, Being on Homebound Instruction since 12/2/2013:

1) Able to get more sound night’s sleep (3 AM –12 PM or 1PM)

2) Wounds/oozing well-managed, minimizing infection risk

3) Improvement in energy level, better able to participate in activities

4) Able to catch up with schoolwork

5) Able to scratch and shed flaking skin in the privacy of his own home, which is socially, emotionally, and psychologically beneficial to him

6) Temperature regulation back to normal (able to play in snow in shorts again) no longer complaining of being “so cold”

Since Brian’s diagnosis of eczema in Dec. 2004, I have kept a log/journal of some kind or other to try to find patterns in foods, activities, humidity, weather–anything that would help us find the root cause so we can fix it. During bad times, the entries were daily and detailed; during good times, just an entry of thanksgiving until the next flare up.

The medical philosophy was: use the steroid ointment to calm the flare, then switch to a non-steroid medicine like protopic or elidel for maintenance. This is reasonable, but I believe in using the least amount of anything to do the most good, so when the flare calmed down, we stopped applying any (non-natural) medication. Maintenance then consisted of continuing the basic eczema protocol and getting an oral antibiotic when the wounds wouldn’t heal due to a skin infection. Elidil and protopic did not seem to make much difference in the itching, redness, or skin quality, so we used Elidel minimally and protopic hardly at all. Mometasone was our go-to steroid, as it always seemed to get the red out, but we avoided using it on the sensitive areas like the face, neck, armpits, and groin. As his redness and itching spread to other body parts, we really did not want to slather mometasone all over his body.

As the years went by, the flares became more frequent, and no patterns really stood out except one: the topical steroids became stronger, we started used them 1-2 times daily (thin applications only on bad parts), and Brian’s eczema got worse. But it took ITSAN to help us acknowledge this. On October 6, 2013, we stopped using all topical steroids on Brian.

Since the fall, I have journaled in excel and taken pictures at various times in his withdrawal, so I could try to find patterns. When a flareup hits and I’m doubting our course of action, I can look at the past pictures and notes and see how far he has come and the improvements he’s made. This blog has become my new journal. I’ve always been a little behind with technology, just didn’t want any part of it. I prefer “Little House on the Prairie” days or caveman times. Heck, if it weren’t for my husband, I’d still be using a dial-up telephone and looking for typewriter ribbon. So here we are, and I hope this blog can help at least a few people avoid the long, painful process of topical steroid withdrawal.

After October 6, life and itch continued as usual. Brian was tolerating school until November 16, 2013, when the being cold and stinging/burning volcano phase started. He missed 3 days of school. He was back at school for one day, then the oozing and flaking started (on top of the itching and burning) the day before Thanksgiving and lasted about 6 weeks. I took him out of school December 2nd because of the wound care he needed, the oozing, lack of sleep, burning, stinging, flaking, and itching. I figured I could let him sleep in as long as he could in the morning, and start “school” after he was ready for the day.

During the first few weeks of “homeschool,” Brian was so tired from lack of sleep and so sick from the withdrawal symptoms that he could barely get through a few assignments at a time. The morning sleep allowed his body to rest and heal during the day, since he was up scratching, tossing, and turning at night. It took almost 2 hours to get ready for the day because all movement was slow and painful, and I often had to help lift him to his feet. He improved over Christmas Break, and official Homebound Instruction began in January 2014.

Today is Day 147 off TS, but the itching is relentless. I try to remind him (and myself) that it is a sign of healing like they say on the forum. The shedding continues, though sometimes it is only 1/4 cup of dead skin crumbs instead of a cup. The increased night time scratching/inability to sleep and the need to sleep into the day continue. BUT there are improvements.

1) He is not constantly red head to toe all the time;

2) Temperature dysregulation is gone for now: he can run around in shorts in the snow again and not be cold;

3) The skin on his back can be as smooth as a baby’s butt 75% of the time and switch to pebble grain texture at other times;

4) Skin on his knees and elbows is thicker, and knees are not scratched up, scarred, and hypo-pigmented;

5) His skin seems to be not as thin because even though he scratches hard and furiously, he is not scratched up like he used to be;

6) Most of the time his overall energy level is better, and we are working on getting his strength and endurance back.

We still have the crying and screaming in pain and itch and long sleepless nights where I rub or scratch his back and feet as he does his best to keep it together, but he is healing and, by the grace of God, we will get through this.

3) Severely flaking skin and thinning of skin especially of his elbows and knees;

4) Non-healing cuts, dotted rash;

5) Rashes and redness remained even with proper steroid application;

6) Itch/rashes were nowfull-bodyrather than just on face, elbows, and knees

as with original diagnosis;

7) Unable to get sound night’s sleep due to constant nightly scratching despite medication (he would finally fall asleep around 6am, only to have to be up by 830am to go to school!)

8) Unable to focus, concentrate;

9) Fatigue evidenced by decline in physical performance on and off baseball field, and

10) No amount of high or low potent steroids relieved the redness, rash, or itch.

No internet pictures of eczema looked like this. Then I came across Juliana’s face, blog, and ITSAN (International Topical Steroid Addiction* Network.) I read her blog and looked at her before and after pictures, and I was ecstatic and filled with hope.

Her before pictures mirrored Brian’s symptoms, though much worse, and her current healed state is incredible. She started with eczema and finished with Topical Steroid Addiction/Withdrawal. She started “the cure” in 2011, and is almost completely healed in 2014. ITSAN.org is a forum of fellow “red skinners,” many of whom started using topical steroids for eczema, and also had Brian’s and Juliana’s symptoms.

No, Brian’s condition wasn’t just eczema anymore. The solution had become the problem. On 10/06/13, we started “the cure” with Brian: total cold turkey cessation of all topical steroids. And the adventure began.

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“I can do all things through Christ who strengthens me.” Philippians 4:13

Brian’s little patch of eczema grew to include:

incessant itching, spreading redness head to toe, burning, stinging, oozing, flaking, insomnia, and thin, broken skin. Through ITSAN, we found that his worsening condition appears to be stemming from the skin's addiction to the topical steroids used to treat the eczema. The cure: stop topical steroids completely; but the road to recovery is hell on earth. This blog shares our experiences so that as Brian eventually heals, others like him may have hope for healing, too.

DISCLAIMER:

Everything contained in this site is an account of personal experiences, and opinions are solely those of the author. The material contained herein does not constitute medical advice. If you have a medical concern, please contact your medical or healthcare practitioner.